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Starbright shines as children connect, cope by Cindy Abole Public Relations What happens when you link the talents of Hollywood director Steven Spielberg, retired U.S. Army Gen. H. Norman Schwarzkopf, a network of highly-skilled specialists and the imagination of thousands of kids in hospitals across the country?  The answer should be stellar in scope; it is called Starbright World.  A multi-million-dollar project, Starbright was established in 1998 as a private online computer network connecting about 80 hospitals nationwide and in Canada. Its purpose is to connect children and help educate them as they learn to cope with the effects of chronic illness. “It's a wonderful program,” said Charles Darby, M.D., chairman of the Department of Pediatrics and director of MUSC Children's Hospital. “Once Starbright was initially presented to me, I was very much impressed. I knew we needed to bring this program to our young patients and staff.” MUSC was among the initial group of top national pediatric hospitals and medical centers approached by the Starbright Foundation to link to the system. Local contacts, manager Sandra Oberman and program liaison Randall Rupp of The Child Life Department were attracted to its educational and interactive benefits. With Darby's support and the financial backing from the Children’s Hospital Fund, participation in the project was underway. By last spring, Starbright became one of a number of coping tools offered within MUSC’s nationally-recognized pediatric hospital.   The program has enlisted participation and philanthropic support from such nationally-recognized companies like Sprint Communications Co., Dell Computer Corporation, America Online, the Paul G. Allen Charitable Foundation and many others. Participating hospitals subscribe to the service and are connected to the Starbright network via corporate sponsor Sprint Communications. Connection services within the Children’s Hospital Atrium and most pediatric rooms were completed in-house. Mobile Starbright work stations, consisting of a computer system and video camera, can be wheeled around to children's bedside allowing them to connect with others who may be hospitalized for long periods of time or who must return repeatedly. Rupp and other child-life specialists are trained in the program and its features. “Starbright is offered to any of our patients who are interested in using it,” said Rupp, citing its effectiveness for kids of different developmental levels and skills. “It’s especially popular with children who are interested in computers.” Users can connect to others using e-mail, instant messaging, chat rooms and bulletin boards in a safe, virtual playground. Another popular page is Starbright Zone, an area that allows kids to be creative and voice their opinions in weekly surveys, contests and other activities. Find A Friend section offers seriously ill children with the chance of meeting others with the same medical condition fostering communication, social support and other coping skills. Other areas of the Web site are devoted to Starbright-approved Web-based games, hobbies, sports, arts and crafts and other activities.  Another Starbright supporter is pediatric psychologist and researcher Ron Brown, Ph.D., associate dean of the College of Health Professions and professor of Pediatrics at MUSC’s Children's Hospital. Brown currently serves on Starbright's health care advisory board. He was a coordinator and investigator for an MUSC-based study for Starbright regarding the affects of instructional videos and CD-ROM teaching materials for children and healthcare professionals in more than 10 national sites. “Our goals are to confirm, test and evaluate products before making claims based on medical-based evidence,” said Brown, who is past president of the Society of Pediatric Psychology of the American Psychological Association.“ We make assessments from a provider’s vantage point that everything is accurate and from a child’s perspective that everything is perceived to be accurate.”  Research has shown that a child’s illness can interfere with their development. According to Brown, chronically ill patients focus on anxieties such as loss of control; worry about effects of disease; family changes; isolation from peers, etc. Starbright provides disease education, social support through its ability to connect kids with others and sometimes even distraction from  the stressors of an illness. For example, the Children's Hospital is interested in Starbright's popular Hospital Pals program. It features an animated Barney doll that provides companionship and support for pre-school aged children with cancer who are undergoing radiation therapy treatments. “Starbright is always developing new materials,” Brown said. “When you think about kids in the hospital, the focus is on trying to help them by facilitating their adjustment or helping them cope. It's what Starbright is all about.” Brown emphasizes the effectiveness and professionalism of the Starbright team. The program relies on an extensive network of specialists from the technology, medical and entertainment industries to contribute in the areas of research, development and educational activities. Contributors are nationally-recognized specialists in their fields with great appeal.  “It's not like a toy manufacturing company or other business,” Brown said. “Starbright actually works with consultants and receives financial support through philanthropy. It's not driven by the market because it has the child’s interest as their primary goal.” “Nowadays because of managed care and changes in the health care system, kids spend a shorter amount of time in the hospital than every before,” Brown said. “They’re discharged earlier. Our findings show that they can benefit from a lot  of social support even at home.” Thus Starbright's programs are being distributed on CD-ROMs for patients to use at home. “As Starbright grows and expands, so will MUSC’s abilities using the program and what we provide to kids,” Brown said. Other Starbright projects in the works include an expanded list of learning CD-ROMs and interactive videos on teen asthma, kids with HIV and end-of-life issues and the development of an expanded home version of Starbright World. Recently, Starbright and its corporate partners have introduced a new scholarship program offering Dell computers, whereby patients with severe chronic illnesses can apply to get a home personal computer.  “It's a program that brings out the best in everybody,” Brown said. “For MUSC, it’s a chance for us to interact with famous corporations and big business. Everybody has an interest in children and their well-being, especially if they’re faced with an illness. This is an interest that brings people together. It’s a project that allows connection with children and I can see other countries benefitting from this type of support.” “It's been a wonderful addition to the Children's Hospital and provides a unique modality for our patients,” Darby said. “It shows far more potential than what’s presently available in allowing our young patients to get information and cope with life’s challenges.” For more information about Starbright at MUSC, contact the Child Life Department at 792-8805 or visit the Starbright Web site at <http://www.starbright.org>   CF specialist chats with patients across U.S. Click. The power comes on. Tap...tap...tap. And with a few light strokes on the keyboard, you’re connected.  Imagine connecting to a world where a child's creativity rules and e-mail, video conferencing capabilities, a 3-D virtual playground and info center links kids together in more than 80 pediatric hospitals in the U.S. and Canada. Dr. Michael Bowman answers questions during Starbright's Ask the Doc chat held in the Atrium April 12. Looking over his shoulder is Randy Rupp. For Michael Bowman, Ph.D., M.D., director of MUSC's new Division of Pediatric Pulmonology, spending some virtual time on the computer can be just as important and beneficial as meeting with his patients face-to-face. Last month, Bowman participated in the Children’s Hospital's first live chatroom experience in “Ask the Doc” chat connecting the cystic fibrosis (CF) specialist to Starbright World users for an hour. It occurred with little fanfare, more specifically at a computer workstation in a quiet corner of the pediatric hospital’s Child Life Atrium. Prior to joining MUSC, Bowman was a consultant to the Starbright program while affiliated with Cedars-Sinai Medical Center and the Children's Hospital Los Angeles (CHLA). Bowman provided his expertise as director of CHLA’s Comprehensive CF Center and contributed in the development of the CD-ROM, “Cystic Fibrosis: Fitting CF in Your Life,” available for teens and pre-teens. This was the first disease-specific program produced for Starbright’s Explorer Series. “This type of indirect interaction in the chatroom is helpful to patients who want information, but may be too shy or unwilling to talk to their own physician about the specifics of their illness,” said Randall Rupp, child life specialist and MUSC Starbright liaison. The network is designed to allow children and teens with similar chronic diseases or serious illnesses to meet on-line and interact with each other to learn more about their disease and cope. “Do you have any pets?,” asks a visitor to the chatroom.  “Yes,” types Bowman. “I had dogs in the past.” Almost instantly, Bowman can see that visitor number one has logged out and two others have joined the “chat.” This afternoon's participants are asking cautious, everyday questions about hobbies, interests and travel—icebreakers often reserved between strangers. Another visitor asks Bowman about his start in  medicine and training as a doctor. “It’s good for patients and participants to ask these types of questions,” Bowman said. “That way they know that as a doctor, I’m also a real person with the same likes and interests as others outside of my professional role.” For teens, the chat room has been therapeutic, said Rupp. A Starbright system referee also  monitors all conversation in the chatroom as well as who logs in and out—in this case, it was a young man with CF. Often, they are available to help guide conversation or even introduce a new topic. Finally, he gets the afternoon’s zinger. “Can a person die from asthma?” asks another  chatroom user. Bowman hesitates to ponder the seriousness of the question. “Yes,” he replies.  “It’s an important thing to teach patients to take care of themselves and help them learn how to manage their disease,” said Bowman.